There are many sources of information and (practical, emotional) support that young people with eczema talked about. These include:
The main information young people wanted were explanations of eczema (symptoms, causes, triggers – including diet) and treatments. Many also wanted information and support for the emotional impacts
. Most people said that health professionals were their biggest source of information about eczema, but that they also used the internet. Some people also noticed their doctors using the internet for information during their appointments. The internet was sometimes used to fill in ‘gaps’ that people felt their health professionals hadn’t covered. Lots of people learnt about lifestyle (like diet
) mostly through looking online. Some thought it would be good for health professionals to talk more about lifestyle also. Another gap that some young people found was that their health professionals often didn’t say much about the emotional impacts of eczema or what support might be helpful. There were some things that young people first heard about when looking online or through friends with eczema but feel their doctors should have told them about, such as the side effects of overusing steroids. Sarah heard about Protopic (tacrolimus)
for the first time through her friend who’d seen a dermatologist privately. Some people looked online to find out about others experiences of having eczema and using treatments such as emollients
. This was especially helpful when first getting a diagnosis or deciding whether to try a treatment such as phototherapy
. The internet could also help with working out triggers
, such as for Sarah who learnt that shampoo, hairspray and deodorant could lead to eczema on other parts of her body
. Other times people typed in specific questions or wanted to see photographs of others eczema to compare to their own. Several young women said they had looked for home remedy recipes and/or beauty products recommended by others which they could try. Two exampls of home remedies Ele found were putting wet oats and natural yoghurt on her hand eczema. The information and experiences shared online are from around the world. Jessica found a lot of online blogs and discussions about vulval eczema were based in America, so their experiences of paying for treatments were different to hers. There were mixed feelings on using the internet to learn about eczema. Evie felt it can be educational and help people talk more openly about their experiences. But lots of people stressed that not everything you read is true or helpful. Aisha described message boards as “murky”. Some people cautioned about home remedies which could be dangerous and scams promising a ‘cure’. Evie checks the website’s name when deciding if it’s likely to have ‘good’ information or not. She says some forums and blogs are not very active and may be out-of-date. Abid suggests asking your doctor about things you’ve read online, but some worried that their doctors would be dismissive. Some people ‘follow’ eczema charities, such as the National Eczema Society, on social media and found they posted helpful information – although many people didn’t know that eczema charities existed. No one we spoke to had been to a face-to-face group about eczema, but some had used online groups, blogs and discussion boards. This was good for those who didn’t know anyone else with it in their ‘real’/offline life. Most people who’d used the groups had read others posts but not written anything themselves. Shams and Jessica hadn’t posted because they didn’t feel they had anything extra to add to what others had already written. A few people had written posts or replied to other’s comments. Sarah has posted in replies but not had any ongoing conversations in the online groups. Online groups and forums often included people sharing their feelings about having eczema. Evie likes being in an online group about eczema because “you can just help each other out” and talking “makes it normal”. Many people said their friends and family didn’t understand in the same way as a person with eczema could. This could lead to them being frustrated by comments (e.g. ‘don’t scratch’) and unwanted suggestions (e.g. ‘have you tried putting cream on it?’) even if they were well-meaning. Not everyone felt they needed or wanted to talk to other people online about their eczema. Some didn’t think they’d benefit from doing so. Most of the ‘emotional’ accounts Ele’s read have been by people for whom eczema is “practically a disability” and she says hers is “minor” in comparison. Alice’s eczema isn’t something she wants online emotional support for and she compared it to other health conditions that she’s more worried about. Laura says she would probably have joined a support group if her eczema had been more severe but feels she’s “reached a point where it’s like not a big thing in my life”. A few people said they would have liked support early on, but don’t need it now that they’ve learnt to manage their eczema.
Some people had never looked online about eczema or hadn’t done so for a long time. Parents had often done some research when their young children were first diagnosed. Sometimes parents helped explain it to the young person, as was the case for Aadam with information that was “too scientific” for him to understand on his own. Some people had done some research online when they got older, but were sometimes put off doing it again. Aisha says she’s “gone through pages and pages and still haven’t come up with anything” helpful. Vicky remembers trying to find online support groups when she was a teenager but stopped searching as she didn’t find what she was looking for. Aadam stopped looking online after seeing eczema described as “a disease”. Evie and Cat had used their university library access to find articles about eczema published in medical journals. Cat typed in the names of her dermatologists to see if they’d written about eczema, as “it just sort of makes you feel a bit more confident in what they're saying”. Some people wanted to be able to share their experiences with doctors to help other patients in the future. Aadam agreed to be a case study for his dermatologist to teach about and Evie feels she helps medical students understand what it’s like to have eczema.